Two years ago last June, Julie, just minutes old, gently led her family and I into the world of the handicapped. Julie was born with Down syndrome. A mysterious extra chromosome created her almond-shaped eyes, tiny nose and low muscle tone. It created some mental and physical retardation. It also caused a complex heart defect which required surgery when she was only 16 months old.
Since Julie’s birth, I have been paying visits to her and her family at least once every three to four weeks. Due to my own predicament, the last time I saw Julie was more than a month ago after a lapse of two months. Today as I think about my own condition, I can’t help but reminisce about the times I was with Julie.
Julie’s dedication to the Lord was the first time her family and their friends had gathered around her in a formal way. The local pastor officiated and I remembered him saying quietly, “Some of us here today are saddened that Julie may never reach her full potential. But who among us will?” Many of us wept. Sorrow was in the air, but it was mixed with pride and love.
Julie’s mother has learned since Julie’s birth that she is not a “normal” person somehow twisted by genetic mishap. Every cell in her body is different from every cell in yours and mine. However, she is, quite simply, another biological version of the human species. Certainly a slower version, and certainly a gentler one.
She has already assumed a crucial role as her family’s peacemaker. When Julie was 12 months old, I discovered this when I was spending an afternoon with her. She was sitting on her quilt on the floor, watching intently her two older sisters, aged 3 and 5, as they began to bicker. She lifted her arms toward her sisters, and opened and closed her hands rapidly, babbling louder and louder. Then she began to cry. Immediately, the girls stopped quarreling, dashed across the room and collapsed together in their sister’s clumsy embrace. Julie stopped crying, and peace was made. What a scene!
Soon after, Julie crawled seven paces for the cracker her father held out to her. She had been battling for that cracker for two months. All of us know that Julie will spend much of her life getting to a place that, for most, is their starting point. But because of new medical and educational developments, she will get there. Julie will spend more time in the hospital than normal children. But she is likely to live into her 50s.
Words come hard to Julie. The simplest kinds of verbal communication most people take for granted are immense obstacles for her. Once I was with Julie and her mother at the dining table with a basket of apples on it. Julie was trying to say something. Her mouth moved in and out, her eyes narrowed. “What is it Julie?” her mother asked. Several seconds passed. “Apuu,” Julie finally blurted out, and her head dropped in exhaustion. The she looked up with a grin. Her expression told all - I said it! All three of us hugged and shared an apple, made sweeter for the effort it cost.
Though life will never be easy for Julie, her future hurdles are insignificant compared with what she has already survived. It is believed that four out of five babies with Down syndrome are miscarried during the first three months of pregnancy and those miraculous few who remain must then survive prenatal testing.
They say that people who are blind develop a keener sense of hearing and smell. I sometimes wonder if Julie’s limited mental and physical powers have created in her a keener sense of heart. Her heart is not retarded. Julie’s mother related to me that when Julie’s sister bought her to nursery school one day, the children descended upon her as if she was a new puppy. Her mother watched nervously as Julie was hugged by each child, her almond eyes wide. Suddenly Julie caught sight of her beaming sister, who whispered, “They love you.” Julie smiled shyly. “I love you,” she said in her own sign language.
Julie is starting to break through the walls of her own retardation to grasp the world. I was speaking with her mother over the telephone and she told me that just last week, Julie slyly escaped her watchful eye, mounted an entire flight of stairs and then called out in victory, “Mama!” Her mother raced to her. Julie was sitting on the top step with a smile of wonder, wearing her independence like a new coat. She has already accepted the dare of life, which is to live it.
Dare I accept mine, and live it too?
**Love**
